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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have two separate questions...

A MyFibroTeam Member asked a question 💭
Cape Town, ZA

The first is; we have all lived with the symptoms for years, most of us, and we did things, we went to work, we did as much socialising as we felt we could, sure things slowed down, but the things that had to happen, did...so why now, that these symptoms have a name, is it so much harder to do the things that we have to? Why is it so much harder to go to work when we experience a flare, but before it was named, we just did it? Sure the name it now has, means it can be conquered, because now we… read more

November 28, 2018
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Answer Summary

Members explored why fibromyalgia symptoms feel harder to manage after diagnosis, with the consensus being that the condition itself... Read more

Members explored why fibromyalgia symptoms feel harder to manage after diagnosis, with the consensus being that the condition itself progressively worsens over time rather than the label making it feel worse, as aging and prolonged pain naturally take a heavier toll on the body. Several members shared experiencing cold feet and described their tongue feeling burnt or swollen, recommending a doctor visit to rule out conditions like thrush, Raynaud's phenomenon, or allergic reactions, while noting that fibromyalgia disrupts body temperature regulation unpredictably. A recurring theme was the unpredictable, hour-by-hour nature of symptoms that makes consistent work nearly impossible, the importance of seeking medical guidance when new symptoms arise, and finding comfort in shared faith and community support through the uncertainty.

A MyFibroTeam Member

Hey i think the reason how it gets harder is not because we no what its called but because it gets harder as we have been in pain for so long and it seams to get worse each time i have a flair my boddy just feels like its had enuff and wants to stop only so much pain you can cope with sending you hugs xxx

November 28, 2018
A MyFibroTeam Member

Check your tongue and see if it has a white film on it. That means you have candida (bad bacteria) take probiotics and cut sugar

November 29, 2018
A MyFibroTeam Member

I think it gets harder as time goes on because we get older. Natural progression.

November 29, 2018
A MyFibroTeam Member

Me too @A MyFibroTeam Member. Same feeling when I have some even gently browned toast - as if my tongue had been scorched. How weird..Never connected it to fibro before. Just shows how helpful this interchange of information is.

November 29, 2018
A MyFibroTeam Member

I think for me, the flares and other symptoms got worse as I aged. I believe fibro is a progressive monster. I worked until I just couldn't do it anymore. I would love to be able to get out and work. But, as we all know, we never know how we are going to feel day to day, sometimes hour by hour. No employer would keep me. And, the brain fog....I would mess up and get fired.
As for the swollen tounge, I don't get a swollen feeling, when I eat kiwi, my tounge burns and kind of itches. I think I may be allergic? I do have issues with swallowing sometimes and swallow the wrong way and end up coughing.

November 29, 2018

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